autism adults

9 Everyday Things That Young Adults with Autism May Struggle With

autism adultsIt seems obvious that young children with autism struggle with many tasks because of deficits with gross and fine motor skills, sensory processing issues, language delays and more. Naturally, this affects how they interact with their peers. In most cases, an autistic child receives support, therapy and modifications in school to assist with these struggles.

But what happens when you’re a teen or young adult with autism and you’re expected to simply “know” how to do certain things? It’s the little things in life that come easy to us that we take for granted. Once a child is out of school, resources dry up. Parents can teach life skills and social skills as best they can, but we can’t think of every possible scenario that might occur and help our transitioning children prepare for the challenges of adulting.

This list I’ve compiled is just a snapshot into some everyday situations that my children struggle with. Being less proficient at simple life tasks could profoundly affect the way they interact with the world.  As parents, we need to continually support and prepare our children. As emergency responders, we need to be aware of these types of everyday struggles, as they can cause a scene to go south quickly if misinterpreted.

  1. Haircuts / Grooming. My son has an extremely sensitive nervous system. Many times for no reason his body feels antsy and overactive, like a million bugs are crawling in his skin. Simple tags on clothing feel like cactus needles on his back. A light pat on the shoulder feels like a taser shock. Haircuts and trimming nails have been an issue with him from infancy. Now, at 15 years old, 9” taller than me and approximately 250 pounds, I can no longer strap him to a chair with belts to cut his hair (don’t judge!). He will fight me if I bring the scissors or buzzer near him. He isn’t being spoiled or malicious, it HURTS to get his haircut. He tries to behave if I bring him to a barber, but he can’t help the wincing and jerking reactions to what we consider a routine activity. As far as his nails go, I still have to wait until he is asleep to cut them! Responder tip: light touch could cause an extreme reaction.
  2. Driving / Night Driving. I don’t know that either of my children will be able to drive. I am going to work with my 19-year old daughter some more, but it is an extreme struggle for her. Her depth perception is skewed, making it seem like cars that are two lanes away are about to hit us. That can spell trouble on these already crazy Atlanta streets. My son simply doesn’t have the reaction time or ability to process simultaneous tasks in order to operate a motor vehicle. Another adult autistic friend of mine does drive, but finds night driving an extreme challenge. This is a simple task we take for granted. When I was growing up, the second you turned 15 you got your Learner’s Permit and your license followed as soon as you were eligible to take the test. As a parent, I am dealing with still having to chauffeur my children around as young adults. Responder tip: remember that someone with autism may struggle with depth perception, reaction time, multi-tasking and night vision. This increases the risk for MVCs.
  3. Making Phone Calls. I was shy as a child. Making calls to businesses or even a new friend was terrifying. Of course, there were no cell phones or texting back then so you HAD to interact with people on the phone… without caller ID! Nervousness and shyness are not the same struggles as my kids have on the phone. When we are at a restaurant or store I make them order or pay to help foster interactions with strangers. Phone calls are difficult. It takes writing out a list of questions with all possible outcomes in order to successfully make a quick call to find out something about a store’s hours or make an appointment. Now, picture how many times we, as adults, have to call our insurance company or a utility company for an error on our bill or a coverage question. Think about the automated menu, what number to press, getting someone live finally and trying to explain your situation, getting told incorrect information and having the ability to ascertain that you can get a better outcome if you ask for a manager or escalate the issue. I picture my daughter trying to argue with one of those companies that automatically charges you for products you canceled… noooooope. Responder tip: be prepared for nervousness and complete shutdown over the phone.
  4. Strangers Knocking on the Door. This is a BIG ONE. It took some major conditioning, social stories, and active drills to get my son to stop opening the door to everyone! I work nights and sleep during the day. There are myriad times when my children are the ones awake to hear someone at the door. Unfortunately, this neighborhood has experienced multiple break-ins and gunshots are often heard nearby. It has been my experience that people with autism are typically trusting and take people’s word at face value. I have had someone knock on the door telling me they were someone I knew, all the while shaking and turning the knob trying to force the door open. I was fortunate to be home and to be the one on the other side of the door with my Glock 36. What if it were my son? I shudder to think of potential outcomes if my children readily open the door to strangers. Responder tip: identify yourself clearly when knocking on a residence door. Be prepared for anything.
  5. Accident or Injury. My daughter’s autism manifests in a lot of anxiety and OCD. This is a good trait when it comes to safety. I’d much rather her call me for every little concern than to do what my son does. He spends a lot of time in his room on his computer. If he injures himself in any way, he simply shuts down right where he is. He doesn’t think to “come get mom” or call for help in any way. Nor does he know how to handle an injury. So he sits there in pain, or in some cases, bleeding, and no one knows. Most of the time my daughter and I frequently check on him in his room, kind of like making rounds, ha ha. BUT what about when I’m at work or asleep? He will not come wake me. The thought of a more serious accident or injury occurring without him understanding to call me, or his sister – or 911 depending on the severity – is terrifying. We continue to work on this daily. Responder tip: do not discount a behavior because a “typical person” should know better.
  6. Job Interviews. It’s that time… my children are about to be 16 and 20 in March. They were fortunate enough to get a private part time job briefly last year helping out a lovely lady with some yard work. It was a nice introduction to exchanging hours for cash. It was flexible. The work was hard, but the employer allowed for frequent breaks and many questions. There really isn’t a resource that helps neurotypical people prepare for job interviews, let alone people with autism. When coaching my children for interviews it’s hard to predict some of the non-standard questions that might come up. Some common autism traits include blunt honesty, lack of a conversation filter, and the inability to recognize any kind of sarcasm, idioms, etc. Phrases like “hold your horses” and “killing two birds with one stone” are taken at face value. This makes job interviews a challenge. Answering questions, knowing the right things to say, and abstaining from over sharing are tasks that do not come naturally. It’s another obstacle to overcome. Responder tip: speak slowly and clearly, and only use words that have one meaning if possible.
  7. A Routine Traffic Stop. My children do not drive, as I wrote earlier, but when doing some research I read a story about a young adult that got pulled over for some erratic driving. The officer asked him if he took any drugs. The young man, 23, took his vitamins that day. He knows that you buy vitamins in a drug store; he said yes, he took drugs, meaning his daily vitamins. He was immediately cuffed and taken into custody. The young man did not understand what was happening. It wasn’t until he was able to call his caregiver that the situation was straightened out. Responder tip: you may have to dig a little deeper with routine questions to get the full picture.
  8. Hygiene / Bathroom Issues. There are no parenting books on potty training a man-sized teenager. Yeah, not fun to discuss. My son had a bowel obstruction a few years ago that was traumatic for him. As a result, his body automatically holds it when he has to make a bowel movement. His sensory issues prevent him from feeling the urge to go until it is too late. And it becomes a self-perpetuating cycle to boot – he fears the experience to be painful so he holds it, which causes the experience to be painful. And round and round we go. GI issues are already commonplace with autism, as are food allergies and sensitivities. I have read on many parenting forums that my son’s issue is not unique. So as a responder in the field, you may encounter young adults that have bathroom issues. Responder tip: do not assume anything about the household situation until you get a full clinical picture.
  9. Picky Eating. “Children won’t starve themselves if you serve them food they don’t like.” Ha! Dr. Spock and all the other parenting experts don’t know my daughter. As a toddler she went five full days without eating when I tried to get her to eat a simple meal that was outside of her three acceptable foods. In fourth grade, she went on a camping field trip with her classmates. She was not allowed to bring her own food. I figured that being around her peers, being outside and doing activities, and not having access to her favorite foods would mean she would get over her picky eating. Silly rabbit… she didn’t eat or drink for the entire three-day trip. She is about to turn 20 and eats four foods. And God help us, they must be the right brand! If it’s pizza the crust can’t be thin, it can’t be too cheesy, the pepperoni can’t be the spicy kind… she has the palate of a sommelier. This is commonplace with autism because it’s not just about “kid approved” foods vs. healthy dishes. It’s about routine, sensory issues, texture, food allergies or sensitivities… there’s so much more here than meets the eye. Going out to eat, social gatherings around food… these are routine to us. But it is a source of anxiety for my daughter. I try to let her view the menu online if we are going somewhere. If there is nothing she likes I let her make something herself and bring it. It puts the ownership on her. It is still a struggle for her and it can be awkward in social situations, making her feel yet another reason that she is “too different” to fit in at times.

Adulting is hard as it is! But these are some standard, everyday activities that my children currently struggle with. How about you? What are some of your experiences that didn’t make my list? Or if you can relate to any of these, what things have worked in your household? Be sure to comment below!

 

autism boys club

Autism is Not a Boys’ Club

autism boys club

In Georgia, the statistics are cited as 1 in 39 boys and 1 in 181 girls have been diagnosed with autism. It is said boys are five times more likely to be autistic than girls. These numbers are in my Autism Training for Emergency Responders class.

After my daughter received an autism diagnosis at age 17, I started digging deeper and realizing that it’s not necessarily the case that less females are autistic, but that many are flying under the radar altogether.

Autistic girls are often regarded as “eccentric” or “quirky,” may be misdiagnosed, or only partially diagnosed. There are so many stories of women finally received an autism or Asperger’s diagnosis in their 30s and 40s, and how relieved they are to find they’re not “defective” after all.

It Hit Home for Us

For my daughter, it truly put the last piece of the puzzle together for us. Things she struggled with unexplainably, such as anxieties and fears, strange rituals, and extreme resistance to change, now made sense. My daughter writes,

“My diagnosis was like a lifeline. It made me feel not alone, and it made me see that I wasn’t broken. For a lot of my life I felt like an alien, I felt like I didn’t really belong anywhere. Knowing I am autistic helped me stop beating myself up over everyday behaviors and I began to accept myself – quirks and all.”

Much of the early research into autism was based on data from boys. When Hans Asperger first defined autistic psychopathy in 1944, it referred only to boys; he believed no women or girls were affected by the condition. Even the current DSM questionnaires are geared toward standard autistic behaviors in boys.

Girls are more likely to engage in “social camouflage” behaviors – like hanging out in groups, mimicking facial expressions, or showing signs of empathy – that mask many of the classic “male” signs of autism. Repetitive or obsessive acts, like collecting things or having intense interests, are seen more as unique quirks than as anti-social behaviors. They may even be quickly labeled as OCD or Anxiety, rather than seeing autism as a root cause.

Clinically Speaking…

Does it make sense that autism presents so differently in females? Think about it. Gender roles aside, the diagnostic criteria for autism is problematic. According to Scientific American, it’s based solely on data acquired from studies of boys.

Those in the medical field recognize that a heart attack presents very differently in women. Women can experience a heart attack without any chest pain or pressure; instead they may experience:

  • Shortness of breath
  • Pressure or pain in the lower chest or upper abdomen
  • Dizziness, lightheadedness or fainting
  • Upper back pressure
  • Extreme fatigue

Why is it so questionable to have something as significant as autism spectrum disorder also present differently?

Resource Gaps Galore

The absence of resources for my adult daughter with autism is due to a trifecta of issues:

  1. Despite autism being a neurological condition, it is still viewed as a mental health issue by many professionals
  2. Females are often misdiagnosed or overlooked altogether
  3. Once a child is no longer in school the resources dry up, creating an unacceptable gap in services for autistic adults

Reducing the gender gap in diagnoses is a start; it is critically important to make sure that females have the same access to resources and care that their male counterparts do.

autism temperature regulation

Autism Tips for Emergency Responders: Temperature Regulation

autism temperature regulationGetting my son to wear a coat in the winter takes an act of Congress, regardless of the frigid outside temperatures. I used to think he was lazy, or perhaps that the material of the coat bothered him (he has a multitude of sensory processing issues and I often have to make sure his shirts are tagless and socks are seamless). Yet, here we are in the midst of an Atlanta summer and for some reason he prefers turtlenecks and heavy sweatpants, despite the array of shorts and t-shirts he owns. What’s going on?

In addition to sensory overwhelm and sensitivity to sounds, lights, smells, and textures, many people on the autism spectrum also have difficulty with temperature regulation.

How does temperature regulation work?

Aspie writer Jeannie Davide-Rivera describes it perfectly as:

…an automated body system that regulates the body’s core temperature in response to outside stimuli. The temperature of the body is regulated by neural feedback mechanisms in the brain, which operate primarily through the hypothalamus. It has the remarkable capacity for regulating the body’s core temperature that keeps your body temperature somewhere between 98F and 100F. When your body is exposed to heat or cold conditions this system balances your internal temperature with the temperature outside.

Why is this an issue for emergency responders?

When you interact with an autistic person that may be hyper- or hypo-sensitive to heat or cold, it creates several issues. First off, recognizing temperature regulation issues in a patient can be tricky. Picture someone peeling off their clothing in the dead of winter, in the face of freezing weather (yes, it DOES get cold in the south!).

What about someone on the playground wearing several layers of clothing when it’s 96 degrees outside? It looks rather suspicious. What’s the first thing you would think as an emergency responder? Drugs? Mental illness?

Not necessarily.

Children AND adults with autism may not feel or experience temperatures the same way we do. They’re acting out what feels natural to them because of temperature regulation issues. Additionally, medical conditions and medications can interfere with the body’s ability to cool itself or to maintain a fluid/electrolyte balance. Couple this with impaired communication and decreased body awareness, and you may witness someone going downhill quickly with no obvious cause.

As we are dealing with these ‘Hotlanta’ wet blanket days right now, hyperthermia is a huge risk. It’s important to recognize the signs of heat exhaustion and heat stroke as rapidly as possible and start treatment right away, regardless of how a patient is dressed or how “disconnected” from our logical, neurotypical world they may seem.

Symptoms to look out for:

  • NOT SWEATING
  • Red, hot, dry skin
  • An extremely high body temperature (above 103°F)
  • Loss of consciousness
  • Rapid and unusually strong pulse
  • Shallow, noisy breathing
  • Dizziness or confusion
  • Nausea, with or without vomiting

Be aware of comorbid medical conditions when treating an autistic patient. There are many conditions that present with autism spectrum disorders such as epilepsy/seizure disorders, anxiety, bipolar disorder, bowel disease, immune disorders, OCD, Tourette syndrome, sleep disorders and more.

autism sexual abuse

Beyond Bullying: Autism and Sexual Abuse

autism sexual abuseI’m a petite single female working in public safety. I’m strong; I lift heavy weights six days a week, I run every other day, I do MMA workouts on the days I don’t run, and I take boxing classes on Tuesdays and Wednesdays. I own firearms and I’m trained to properly handle them. I have an advanced alarm system, security cameras, and two giant huskies that share my residence. I’m situationally aware of my surroundings at all times.

And yet…

I receive a daily assortment of inappropriate advances from what I affectionately term as “creepers.”

I’ve also been a victim of sexual assault four times in my adult life.

You know what? It sucks. Big time. It’s not without its permanent price. So if this can happen to a strong and socially aware neurotypical female, where does that leave my beautiful 19 year-old Aspie daughter? How is she to navigate the Land of Creepers? How is she to protect herself?

Communication alone is a challenge. While I can read into seemingly “innocent” texts from my band of creepers and see there is intent (and they think I don’t! Ha!), my daughter is not so adept at underlying messages, innuendos and body language. It’s not just about someone snatching her on the streets; the reality is that she is likely to innocently get herself entangled in a bad situation by simply not picking up on social cues.

Why are they at risk?

A study done of 55,000 children showed a child with any type of intellectual disability was four times more likely to be sexually abused than a child without disabilities (Sullivan & Knutson, 2000). While no specific numbers exist for individuals with autism, research suggests that this population is extremely vulnerable.

Those on the spectrum are generally taught compliance from a very young age, making them easy targets for criminals. Combine that with difficulty picking up social cues and understanding other individuals’ intentions, and the end result is vulnerability to a range of crimes.

Hard to spot

According to Special Ed Abuse, nearly one in six autistic children have been sexually abused.

Recognizing it can be extremely challenging, as communication deficits mean that a child’s report could be unreliable. Typical signs of sexual abuse in children MAY be an autistic child’s baseline behavior. These signs include:

  • Sleep disturbances
  • Angry outbursts
  • Anxiety
  • Depression
  • Difficulty thinking or concentrating
  • Withdrawn behavior
  • Propensity to run away

Since self-reporting of abuse or trauma by individuals with ASD may not occur, it is important that family members, caregivers, behavior support specialists, and other professionals in the child’s life receive training on potential behavioral changes that may be associated with trauma exposure so they may assist in reporting and obtaining services.

Signs of abuse that are unique to autism may include exacerbation of social anxiety, remembering or re-enactment, changes in the child’s baseline behavior, and new onset or increased self-injurious behaviors.

Also keep in mind that when encountering professionals within the criminal justice system, persons with ASD may not respond to verbal instructions, they may avoid eye contact, appear argumentative, become agitated and anxious, appear to be under the influence of narcotics, or only repeat what is being said to them. These behaviors should not be interpreted as deliberate, disrespectful or hostile.

They may also be fixated on a particular object or topic and may ask repeated questions, speak in a monotone voice with unusual pronunciations, and be honest to the point of rudeness. They may not understand the extent of the trauma they experienced, nor the expectations of assisting within the criminal justice system.

Most police departments have a Crisis Intervention Team, which staffs a psych nurse and an officer trained in psychiatric crisis management. They have many tools available to them that other officers may not. If you suspect autism, seek assistance from department assets such as a mobile crisis team or unit early on in the legal intervention, as they can help identify if the person may require special assistance from psychiatric professionals.

For more information about getting your department trained and certified in autism safety, click HERE.

Nonverbal Autism

7 Tips for Communicating with a Nonverbal Autistic Patient

Nonverbal Autism

Just because a person can’t speak doesn’t mean they have nothing to say.

Communication is a basic human need. In fact, it falls fairly predominantly in the middle of Maslow’s Hierarchy of Needs, under “Social Belonging.” The ability to communicate makes it possible to exchange opinions, thoughts and meanings, enabling us to express ourselves and show our own points of view.

Autistic people with little to no speech have the same communication needs as the rest of us! As I teach in my autism training for emergency responders course, there is a huge misconception that being a nonverbal autistic is synonymous with “low functioning” autism, or even having a low IQ. In my experience, this couldn’t be further from the truth.

Nonverbal people often have extremely vibrant imaginations, intense emotions, passionate interests and a brilliant intellect. They just have to work a little harder and more creatively to convey these things in a neurotypical society that relies on spoken words and often-misread body language.

Communication on scene

When you arrive on a scene as an emergency responder, communication with your patient is vital. Where I work, I frequently face language barriers, making it challenging to obtain key information in order to treat the patient with the right protocols and do no further harm. The situation is magnified because the patients and their family members typically don’t understand what I am asking them, nor can they communicate what they are feeling and experiencing, and what medical interventions they need from me.

That’s one advantage (and another debunked myth!) of communicating with a nonverbal person on scene – nonverbal DOES NOT EQUAL non-hearing. This is a huge plus when your patient understands what you are asking.

Knowing this, here are some tips to communicate with a nonverbal autistic on scene:

  1. Use the caregiver. Find out from the caregiver if you can: what is their primary means of communication – what kinds of body language are they familiar with? Do they clap for yes? Do they use sign language? Gestures? Most times, family members are a WEALTH of knowledge on scene when it comes to autism.
  2. Seeing eye to eye. People with autism may not give you direct eye contact, but simply sitting or kneeling so you are at the same level as your patient speaks VOLUMES in gaining rapport. Sometimes that’s all it takes to help alleviate the fear of an emergency situation, therefore helping to get the person out of defense mode and more able to communicate with you in their own way.
  3. Narrate. It may sound silly, but even if you can’t communicate with your patient and get no response whatsoever, remember THEY CAN HEAR YOU. Unless it’s a critical patient, I will always announce exactly what I’m about to do to a patient, and continue to ask questions as I’m doing it, looking for any sign of understanding in their face or body language.
  4. Offer choices. Asking a nonverbal patient, “Do you want X (and point to or hold up what you are referring to) or Y? (point to or hold up the alternative choice)” can open lines of communication and help them feel more in control of the situation. Remember, the less they feel in control of what’s happening around them, the more a complete shutdown of the nervous system is imminent.
  5. Pen and paper. Simple, simple, simple… always keep a notebook and pen in your pocket! Sometimes even adults with autism that are verbal lose their ability to communicate under distress. The opportunity to write down their needs can make the scene run safely and smoothly.
  6. The Sign Expressions Language Mini Chart for Emergencies. This mini chart includes photos, words, and phrases to help facilitate communication during an emergency, including HELP, INTERPRETER, ALLERGIES, the Alphabet (Spanish and English) and Numbers. Our trilingual sign language mini chart is pocket sized (4″ by 6″) and include many important words to use during an emergency situation by First Responders, Health Care Professionals, and many others.
  7. Phone it in. Okay, not literally, but… our smartphones have become almost necessary on scene these days. They help us with language interpretation, drug calculations, pregnancy due dates, and of course, patient reports en route to the hospital. It may be helpful to also have an app for nonverbal autistics on your phone. Here is a list of apps available through iTunes, as well as Google Play.

Over to you…

Have you encountered a nonverbal autistic child or adult on scene? What worked for you? Share by commenting below!

autism self injurious behavior

5 Possible Causes of Autism Self-Injurious Behavior

autism self injurious behavior

Both of my teens experience significant gastrointestinal issues as part of their autism. I was out running errands with my daughter (who just turned 19! How did this happen?!) and she had severe cramping from abnormal cycles and anxiety. We had no access to pain relief meds; then I looked over and saw her punching and pushing on her stomach. She said it actually felt better… and admitted this wasn’t the first time she’s hit herself for pain relief.

She said, “I wonder if this is why some people with autism hurt themselves, to actually relieve the pain.” She told me that the combination of the pressure and the feeling of doing something about her pain made her feel better.

I started to wonder exactly why self-injurious behaviors occur. On scene it presents like a behavioral issue that must be dealt with swiftly. But there is definitely more to it, and understanding it can help us help our patients more effectively.

What is self-injurious behavior?

In the mental health industry, the definition of self-injury (also termed self-mutilation or self-abuse) is defined as the deliberate, repetitive, impulsive, non-lethal harming of oneself. It often includes cutting and scratching. There is typically a deep-rooted psychological history that accompanies this type of self-injury.

With autism, it can look a little different. The most common forms of these behaviors include: head banging, hand biting, hair pulling, and excessive scratching. According to the Autism Research Institute, there are many possible reasons why a person may engage in self-injurious behavior, ranging from biochemical to their social environment.

These are the top 5 tangible reasons that will help you in the field.

Chemical “messengers”

There is a suggested relationship between the levels of neurotransmitters and self-injurious behavior, in that self-injury may increase the production and release of endorphins in the brain. As a result, a person experiences an anesthesia-like effect, allowing them to no longer feel pain while engaging in the behavior (like my daughter punching her stomach). The release of endorphins also may provide the individual with a euphoric-like feeling.

Seizures

Approximately 1/3 of people with autism have an accompanying seizure disorder. Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes, exhibiting behaviors such as head banging, slapping the ears, hand biting, and scratching the face or arms. It is critical to realize seizure-related self-injurious behavior is involuntary and may require restraint. Seizures may typically begin when an autistic child reaches puberty.

Pain

Another reason for this behavior, once again as in my daughter’s case, is simply to reduce pain. There is growing evidence that pain associated with gastrointestinal problems and inner ear infections may be associated with self-injury. The behavior may dampen the pain, but also may “gate” it to another area of the body, serving as a distraction.

Sensory Issues

Self-injury can be a defense against an overwhelming sensory environment. Just being in a public place can be physically painful for someone with sensory processing issues, as their senses are often magnified and they struggle with the filtering of background noise. They may hear everything – times 10 – in their face at all times. And that’s just ONE of the senses – add to that sensitivity to lights, smells and more.

Excessive scratching or biting may be an extreme form of stimming, which helps “reset” the nervous system. An under-active nervous system SEEKS input, so some self-injurious behavior is an attempt to placate their body’s need for sensory stimulation.

Frustration

This behavior can also be a result of sheer frustration. An autistic person that struggles with communication skills becomes frustrated because of their lack of understanding of what was said (poor receptive communication) or because the parent or caretaker does not understand a need they have attempted to communicate. Imagine repeatedly not being able to effectively express your needs to the people responsible for meeting them.

In Summary

As I share in my autism training for emergency responders, self-injurious behavior is most typically rooted in pain. As a parent, instead of stopping the behavior, you can sometimes provide safety and cushioning. In the field, we rarely have that option. Safety is an issue and the behavior must be controlled.

Being aware of multiple reasons for a behavior (as opposed to perceived non-compliance) allows us to look for a physical or medical cause and address that first and foremost, which contributes to the safety of everyone involved.

Over to you…

Have you encountered self-injurious behavior on a call? How was it handled? Share by commenting below!

autism wandering

Emergency Responders: 7 Things You NEED to Know About Autism Wandering

autism wandering

As an autism mom, worry and fear can be my constant companions. My entire life can change in the blink of an eye, especially because my child wanders.

My son has been wandering since he could walk.

One particular time, he was playing with the hose in the front yard. Wearing no shirt or shoes, he didn’t have a care in the world. He loves water. Seconds earlier, I had checked on him through the kitchen window and he was fine. Then his sister went outside and they got into a small scuffle… she told him to “get lost.”

People with autism are very literal. That’s exactly what he did.

In less than two minutes he was GONE.

I activated 911 and had the whole neighborhood searching for him. 3-1/2 hours later he was found several blocks away under a bush. I shook him and hugged him and asked what on earth he was thinking! He only replied, “My sister said get lost.”

My son, now 14, is nine inches taller than me, has a mustache and wears men’s large sized clothing. While he wanders more “online” these days than out of the house, it is still challenging to keep him safe, especially if we go to public events and gatherings.

I have multiple stories of “close calls” like this. As an emergency responder, I’ve been tasked to find missing children at festivals and responded to autism-related EMS calls. If you’re a first responder, here are 7 things you need to know about wandering.

  1. It can happen in an instant. Just like my story, thousands of autism parents have literally “blinked” and had their child disappear on them. It is beyond terrifying. Know that children with autism are not being manipulative, calculating, or trying to get out of a test at school… something catches their eye, or they are experiencing sensory overwhelm, and they run.
  2. It’s more common than you think. The National Autism Association cites that 49% of autistic people are prone to wandering away from a safe environment, which is nearly four times higher than their neurotypical siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers. 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. 40% of parents have suffered sleep disruption due to fear of elopement.
  3. They are drawn to water. In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. In my Autism Training courses I teach parents and emergency responders to search water first if a person with autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. For more information on WHY they are drawn to water, read this article.
  4. They may not seek help. Don’t assume wandering is a crisis or emergency to someone with autism. They may be perfectly happy in their own little world and not seek assistance just because they are “lost.” I’ve seen cases where an autistic child was hungry, walked into a strange family’s house and sat down at the dinner table! If you ARE searching for a missing person with autism, don’t discount looking in tight spaces or odd locations simply because a reasonable person wouldn’t go there. I’ve witnessed children found between mattresses behind a dumpster and inside a hay bale.
  5. They may be nonverbal. Even if a child (or adult!) is typically verbal, under the duress of an emergency they may not be able to communicate their needs. In fact, over one-third of autistic people that wander cannot communicate their name or address. Look for alternate IDs, such as bracelets, shoelace tags, phone apps, or QR codes to help you identify someone and get their medical history and caregiver contact information stat.
  6. If there’s a reason, it probably seems trivial to you. The other night, at approximately 4 am during my shift, my ambulance was parked at a convenience store. My partner and I were standing outside, enjoying the fact that we finally got to stop for a long-awaited cup of coffee, when a 15 year-old boy walked up to us. He asked if we could call his mom and apologize for him for not doing the dishes. He said, “Please tell her I’m sorry and I want to come home.” I saw him tapping his index fingers together repeatedly (“stimming“), recognized some of his other behaviors, and immediately identified him as autistic. After some careful questions, we discovered that he failed to do the dishes 12 hours ago and was so upset that he left home. He had been wandering the streets of Atlanta and riding local trains on and off since 4 pm that afternoon. Luckily, we were able to contact his parents and they immediately came to pick him up. They both cried tears of joy that he was found safely.
  7. Parents may be afraid to call 911. The parents from the situation above had been driving around all night looking for their son. They told us that they were, “…about to call 911” when they got our phone call. As a responder, you are probably thinking, “WHY DID YOU WAIT SO LONG!” But as a parent it is scary. You want to believe they are right around the corner. You want to believe they’re hiding in the house somewhere, playing a terrible joke on you. You want to believe you can handle it yourself before getting public safety involved. There is a stigma around “losing” a child. Law enforcement doesn’t yet understand all the nuances and variables of autism. I’m not saying parents are RIGHT to think and feel this way, I’m just saying these are thoughts that go through our mind. It does not necessarily indicate abuse or neglect, so please, as a responder, consider the big picture and dig a little deeper if you are involved in a situation involving a wanderer.

For more information on autism training for emergency responders, wandering, or safety tips, contact Debi@SpiritOfAutism.org.

fidget toys autism

Top 5 Autism Sensory Items to Keep in Your Jump Bag

fidget toys autism

If you are on a chaotic scene and you’ve identified either a patient or family member as autistic, congratulations! Understanding a person’s gifts and challenges and communication style goes a long way in being able to help them. In the immortal words of G.I. Joe, knowing is half the battle :)

But now what?

As you know, emergency situations are challenging for EVERYONE. Add sensory processing issues to the mix and have a recipe for imminent meltdown. To help alleviate this, it’s always best to try and eliminate triggers first. Can you turn off the lights and sirens? Can you remove the person from the main part of the scene and get them into the back of the ambulance, where it’s quieter? If not, can you remove unnecessary bystanders and personnel? How about allowing one main person to do the assessment and ask questions?

Even with these techniques in play, emergency situations can still be extremely overwhelming for autistic children AND adults alike. I’ve learned over the years that there are some simple items you can always have on hand that may aid in keeping an autistic person calm and helping to avert sensory meltdowns. Here are the ones that have been most helpful to me on scenes (these are not affiliate links, I receive no revenue or credits for promoting any of the below items):

Autism Sensory Item Number 1: Paper and Pen

A meltdown is a product of sensory overload and is rooted in the nervous system. Even someone who is typically verbal will have challenges once this begins. As the brain escalates, the ability to be rational and articulate diminishes rapidly. The simple act of allowing someone in the midst of overwhelm to write down their needs can be a true lifesaver. (And if you’re a good Paramedic/EMT/LEO you should always have this on hand anyway!)

Autism Sensory Item Number 2: Miniature Slinky

These little guys are AWESOME! They are best used as a distraction, especially to keep idle hands busy while doing any primary questioning. Remember, just because someone with autism appears to not be paying attention (lack of eye contact, engaged in another activity), they typically can still hear you and process what you are asking. It will simply take a little longer, so be patient.

Autism Sensory Item Number 3: Fidget Toys

Similar to “stress balls” these fidgets are wonderful to have on hand. Within the stitched mesh there’s a movable marble. If you don’t have access to this type of toy, many dollar stores have the little squishy, nubby balls that work just as well.

Autism Sensory Item Number 4: Earplugs

Simple, soft foam earplugs from Walmart can help block out unnecessary noise on scene. Because they go inside the ear, however, someone with autism may or may not tolerate them. My son prefers headphones over earplugs but may use these if they are the only alternative and he’s heading into overwhelm from the noise.

Autism Sensory Item Number 5: Penlights

Children with autism are often fascinated with cause-and-effect activities. My son was OBSESSED with light switches and remote controls as a child. These disposable penlights are cheap and will offer a means for distraction during your assessment, without sacrificing any of your own personal tools.

I hope you found these items helpful. Remember; NEVER give a patient your phone, keys or flashlight. Trust me, I’ve learned the hard way!

What items have you found useful on a scene to calm a patient? Share your comments below!

autism echolalia

Autism Tips for Emergency Responders: Stop Echoing Me!

autism echolaliaHave you ever had that one annoying sibling when you were growing up that would torture you all afternoon by repeating EVERY. SINGLE. THING. YOU. SAID? No matter what you did, you couldn’t get them to break. It was like Chinese water torture.

Whether an autistic person is verbal or nonverbal, you may encounter the same behavior on a scene… from an adult. You ask them for their name, some ID, and other typical questions, and all you get back are echoes of what you’re asking. What’s your first reaction? “This smart *** is being non-compliant! WTH!”

I assure you, even if you witnessed them speaking in complete sentences prior to your standard questioning, the anxiety and distress an autistic person experiences during an encounter with public safety can result in the loss of their ability to articulate at all.

It may appear that they are being disrespectful but they are NOT. They are trying to communicate the only way they know how. It’s called echolalia.

What Exactly is Echolalia?

Echolalia is the repetition of phrases, words or parts of words.  Naturally, younger children, while learning to talk, will “parrot” what they hear as part of the process. That’s not what I’m referring to.

There are two types of echolalia. You may be on scene with a teen or adult that is repeating back everything you are asking them instead of giving you direct answers. This is called “Immediate Echolalia.” For example, if you say, “Do you have any ID?” the person may immediately reply with, “Do you have any ID?” It will typically be in the same tone and inflection that you used.

By repeating back words, the person is actually demonstrating that they can hear you accurately, but may not immediately comprehend what you are saying.

According to friendshipcircle.org, some adults with autism explain that immediate echolalia is a way of communicating, “I heard what you said, and I’m still processing it.”  Immediate echolalia is an attempt to remain in a conversation and give an on-topic answer, before the meaning of the conversation is fully grasped.

How do you support increased comprehension? Use visual aids, and involve as many senses as possible, but be careful not to overload them with too much sensory input. Also be aware that if you are offering two choices and the person verbalizes the second choice, they may be REPEATING the last thing you said, not actually answering your question or making the choice.

Delayed Echolalia

Back to the scene, you may ask, “Do you have any ID?” and the person may respond, “Cheeseburger,” or a punchline from a joke or TV show. This is called “Delayed Echolalia.” A person with autism typically likes to memorize and recite catch phrases, verses, portions of historical speeches, or funny scenes from their favorite commercial or movie. Unlike a neurotypical person that will retrieve a funny one-liner from a movie and throw it out for humorous effect in context, delayed echolalia will rarely be relevant to the conversation at all.

My son seems to have a new catch phrase almost monthly. We’ll be walking the dogs together and a neighbor will wave and say, “How are you?” My son might reply, “I am a person.” because that’s what he’s been saying all month, regardless of what the conversation entails. It will be his answer to everything until he finds a new catch phrase to repeat.

You should hear the variety of responses we get to that ;)

Sometimes delayed echolalia occurs because it’s calming the person’s nervous system, a form of self-stimulatory behavior. Typically, however, it stems from wanting to participate in conversation but being unable to fully understand the content of what’s being discussed. 

As easy as it is to assume non-compliance, it’s critical to realize that both versions of echolalia represent a desire for inclusion in conversation.

Share in the comments below if you’ve experienced echolalia with anyone before!

far from heaven

I’m an Autistic Adult… and I’m in Purgatory

far from heavenI’m 18. I graduated high school last July. I’m “high functioning” enough to be able to take care of my brother and myself when my mom is on night shift on the ambulance. I can dress myself (although not according to society’s “fashion” standards), I keep up with hygiene, sleep and wake on a self-imposed schedule, participate in online communities, cook for myself, help out around the house, and manage my own bank account. No, I haven’t learned how to drive yet. No, I haven’t applied for college. No, I don’t yet have a job but I’m looking for one. It really has to be something quiet and not too overwhelming, though, because there are currently no resources or tools for me to learn how to manage all the challenges I now face in the adult world.

Autism awareness and diagnoses have risen dramatically… for young children. In elementary school my brother had access to all sorts of special accommodations and therapies. Unfortunately, being a girl, I actually didn’t receive a diagnosis until I was 17, because autism presents very differently in girls.

From infancy throughout the schooling years, interventions are readily available. But what happens when you turn 18? Where are the resources? Who teaches us how to interview for jobs? Buy a car without getting ripped off? Balance a checkbook? Pick the right auto insurance? Do taxes? Grocery shop and plan meals? Go on a date? Figure out the best cell phone plan? Find friends?

Society seems to think one magically “grows out of autism” once they reach adulthood, especially if you’re considered “high functioning.” My symptoms are seen as “not really severe” so I don’t qualify for any kind of adult support…

… yet I’m not entirely sure how qualified and ready I am to “adult” right now. Of course my mom works with me on some of these things, I don’t want to make it sound like she’s not parenting me and teaching me about life. But being a young adult with autism, trying to figure out the next steps to life presents with far more struggles than simple social skills deficits.

What is “High Functioning Autism?”

According to LoveToKnow.com, the term high functioning autism, or HFA, is used to describe individuals who meet the criteria for a diagnosis of autism, yet show no cognitive delays, and are able to speak, read, and write, as well as have IQ scores of average or above. Those with HFA do suffer difficulties in communication, language, and social interaction typical of autism, as well as repetitive behaviors and narrow interests associated with the disorder. Abstract language concepts, such as irony and humor may well be beyond the comprehension of adults with high functioning autism.

While with the right support we can manage independent and successful careers, marriages, and social lives, it can still be difficult to blend into the mainstream world. Crowds, even small ones, can activate sensory overload for me and make me shut down. Fluorescent lights, smells, or certain combinations of sounds make my nervous system crawl with pain and discomfort. I have extreme anxiety dealing with the public.

Social awkwardness and communication issues can make me highly misunderstood and even considered rude. Inability to maintain eye contact during conversation can cost a job interview or friendship, as it is often misinterpreted as dishonest or lacking interest. Maybe I pass an interview and secure a decent job, but the challenges don’t stop there. Workplace camaraderie is terra incognita for many high functioning autistic adults. Small talk and sarcastic humor go over my head, and I’ve been known to not have a filter when it comes to appropriate thoughts to verbalize in conversation. Don’t even get me started on not understanding body language or non-verbal cues and facial expressions.

I’ve been accused of being odd, serious, quiet and aloof, when really I’m severely over-analyzing a simple response to “How are you?”

Being high functioning, I often feel that even the autism community discounts my struggles, as my deficits are compared to the hardships faced by the profoundly disabled. So I feel isolated from mainstream society, yet have trouble finding resources for my issues. Less severe symptoms mean I am denied applications for medical and psychological assistance.

I applaud all the awareness and resources put forth in general when it comes to autism, but there is a long road ahead of us still.

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For tips on recognizing adults with autism on the scene of a crime, fire, medical call or disaster, check out this article, Trix Are for Kids, Autism is Not (Only)!